Cholinergic Urticaria

I think I have heat hives but can’t sleep!

by

Hi, everyone. I have been struggling to make sense of some strange symptoms that my GP seems to have no real idea about! I am 44 and in general good health, so I was taken aback about 2 months ago when I started to get really strange sharp pins and needles sensations when I took a hot shower all over my body.

I thought nothing of it, but it persisted. Then I started to get the same waves of really painful electric shock like sensations across my back, chest and legs when out and about. I saw my GP who prescribed strong antihistamines, but these made no difference.

I began to notice that these painful waves often occurred when there was a change in body temperature (ie. when I played football, climbed a hill, etc.). I noticed that symptoms went away when I cooled down. However, there are never any visible signs of hives, no rash, no raised bumps, and so I’m not sure now if this is heat hives as many people seem to have a rash??

My theory about these flares being temperature related are not consistent, as I am not getting them at night and am really struggling to sleep? I fall asleep OK and then wake every 1-2 hours often with painful prickly sensations across my back and chest. I get up and they go away. I try to sleep again but they return, its driving me mad!

It’s not hot in my bedroom. I leave window open but still it happens? So, how come this happens as I am not exercising, just trying to sleep? All other times my symptoms seem to be related to exercise or temperature? My GP has been much help, he then prescribed me amitriptyline, which made me feel dreadful and really low and no improvement in symptoms.

I went back and mentioned I thought I may have heat hives, but he didn’t seem knowledgeable. He has now referred me to Neurology? Looking at forums I’m not sure if this will help as many seem to be referred to dermatology (yet I have no visible rash so maybe that’s why?).

GP has just prescribed me gabapentin (300mg daily), but he admits this may or may not help! Has anyone tried this and did it help? I have not taken it yet as worried about side effects. I am desperate for some sleep so any advice most welcome. I’m also at a loss regarding what I have and why now.

I don’t feel this is anxiety related. I’m ok otherwise but am now unable to enjoy activities as it triggers waves of painful sensations (I now struggle to play footy with my kids, walk the dog. go hiking etc..). I’ve also tried to change shampoo and lotions but no change so I don’t think its an allergy.

The only time I get any sleep is self medicating with whiskey and codeine which I know is not the answer!! (GP offered me zopiclone to help me sleep but also said they are very addictive and not to use often so not keen)

Sorry for the long post, but I was just chuffed to find somewhere where others have described similar experiences!!

Warm Regards,

Simon

Comments

  1. Hi i have something that sounds the same ,although not as bad as you.There is some help videos on utube by a doctor.You have the symptoms but not the signs of hives.I can ease mine by not having hot showers ,or hot drinks,or stressing less.Look up Cholinergic urticaria heat hives video.Hope this helps.
    Regards Neil.

    • Thanks Neil for sharing, I have looked at various videos but most seem to say very little and the try and sell me some lotions or miracle cure book! I can ease my symptoms during the day but this means not doing things I enjoy such as walking, football, hiking etc.. I’ll keep trying and hope it goes away!

    • Thanks Neil for sharing but videos all seem to just want me to buy a book or lotion! I’ll keep trying!

    • Thanks Neil, videos are not much use sadly, main issue currently is lack of sleep and not much I can about that it seems!

  2. I know you’re desperate, but you should Never mix alcohol with Any drug. Learned of the liver destructive damage in pharmacology course. Is there any possibility that you have black mold in your bedroom/home? The ice prick sensations you mentioned opened a memory in me that I read somewhere, and am wondering if this toxin has a basis for everyone with CU.

    • Hi Deborah, no black mold at home and it still happens when away from home, I agree that alcohol is not the answer but when you haven’t slept for 2 weeks anything that helps is tempting!

      • I experience the same problems, I sympathize with you about lack of sleep. Don’t let anyone make you feel bad about what you need to do to go to sleep. I’ve gone without sleep due to the same issues for 3to4 days and nights in a row, to the point that I began having hallucinations from no sleep. When you get to that point you will do what you need to to get some sleep. Hope things get better for you.

        • Thanks Cindee, symptoms slightly better at mo but I think that’s just because its winter and colder! I agree that lack of sleep is just awful and getting some, somehow is a bonus!

          Warm Regards
          Simon

  3. So sorry for your trouble, Simon. It seems that many people get relief from changes in their diet. I would recommend reading the book that is available on this website. And in the meantime, go on a very simple and bland diet. My son found that sugar is the culprit for him, and when he quit eating sugar of any kind, his symptoms improved greatly. You will have to experiment to find out what you may be sensitive to.

  4. STEAM ROOM!!!! works like a miracle. spread the news like the GOSPEL haha. I went it to a steam room sweat my balls off for 10 minutes and I was healed. It was literally the most joyous thing I have ever experienced in my entire life since heat hives has ruined my life the past year. I haven’t been one ounce of itchy since my steam room session a week ago. (Talk to your doctor before attempting sweat/steam therapy).

  5. Hi Simon!
    I was just recently told that I had CU, something that I’ve been trying to find out for eight years now. I too have problems sleeping sometimes, as I start to sting and itch everywhere.. I’ll have my temp turned cold, fans on and eveything and not be hot at all and still itch. I too don’t have visible signs of this. (I do when I run though. I don’t get giant whelps like most but my skin flushes.) Anyway, sometimes when I’m trying to sleep I’ll start to itch where I ALWAYS break out first: my legs! It feels like the surface I’m laying on, or the sheet on my is making me itch to death. Standing up helps, which makes me think maybe it has to do with just contact. Heck, even the air seems to hurt sometimes. So far the only thing that’s worked for me is a benadryl..

    It’s hard to think that CU is the problem when you’re just trying to go to sleep.

    But another theory of mine is that just because you don’t feel hot (or cold for some people) doesn’t mean you are. Next time you’re trying to sleep and it happens again have someone feel of the temperature of your skin if you can!

    Best of luck and keep us updated if you find anything out! I would love to know.

    • Hi and thanks for your thoughts, my symptoms are a bit better since I started taking 100mg daily of gabapentin, my GP prescribed 300mg but I just take one a day and things are definitely a bit better, still get them when exercising but less so at night so fingers crossed!

      Regards
      Simon

  6. It is so much worse at night. I take benedryl so I can sleep 4 hours. But the cooler the room the better I am. It isn’t bad in the daytime. Good luck my friend. Patti

  7. All – I have been on Doxepin – 20 mg (doctor prescribed) along with Eucerin Calming cream on my feet and other dryer areas which allows me to get through a night of sleep. I just started the diet from the Hives book and it has been fairly easy to adjust. Additionally my doctor is having me take Xyzal in the morning, and Singular and Zyrtec at night (I don’t yet know if this will work). I had previously been through heavy medicines (Prednisone, and other nerve focused drugs) but they did not work. I have tried to “sweat it out” in a pool and sauna and it was pretty painful, but I am going to go back and try it again soon.

    • cheers Josh, hope it works for you, my GP seems to be testing all sorts but not sure what works, 100mg gabapentin seems to be helping me a little but who knows!